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Every case of Parkinson’s disease follows its own timeline. No two people move through it in quite the same way, and that unpredictability can feel unsettling, especially in the months right after a diagnosis. But learning what tends to change, and when, can turn worry into a plan you and your doctor can act on together.
Parkinson’s symptoms can change from day to day, and even from hour to hour. A symptom that bothers you one day may be less noticeable or not affect you at all the next. That’s one reason why tracking changes over time, rather than focusing on any single hard day, gives the clearest sense of how your Parkinson’s is progressing.
The main movement symptoms of Parkinson’s include tremor, slowness of movement (bradykinesia), and stiffness (rigidity). As Parkinson’s advances, you may need more help with activities of daily living, like showering or getting dressed.
Additional movement symptoms that often show up or get worse include freezing of gait, a sudden, temporary inability to move, along with falls and imbalance.
Speech can become softer and harder to understand, and swallowing can become more difficult, which may affect nutrition. Thinking and memory can change, potentially leading to dementia, and problems with bladder or bowel control can develop, too.
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Uncontrolled, involuntary movements called dyskinesia can also become more common over time. Dyskinesia usually isn’t a symptom of Parkinson’s itself, but a potential complication of long-term use of levodopa, the medication most people rely on for motor symptoms. Dyskinesia is different from the muscle cramping called dystonia.
You might also start to have “off” time the longer you’ve had Parkinson’s. Off time is when Parkinson’s symptoms, whether movement-related or not, return or get worse. It doesn’t only happen between doses — it can also show up first thing in the morning, before your first dose kicks in, or suddenly and unpredictably.
As dopamine-making brain cells are lost, the brain becomes less able to store and steadily release dopamine, so a dose may not give the same smooth relief it once did. High-protein meals, constipation or slow digestion, stress, poor sleep, and illness can also affect how well and how long a dose works. Spotting and managing these episodes is important.
During off time, motor symptoms that had improved with medication can return, such as:
Nonmotor changes are common during off time as well, including:
One large research review of many studies found that Parkinson’s movement symptoms worsened by about 2 percent per year on average. However, that average doesn’t tell the whole story. Parkinson’s affects everyone differently, and symptoms may progress faster in some people than in others.
Based on the same review study, motor symptoms seemed to worsen faster, at about 4.5 percent a year on average in people before they started treatment, compared with roughly 1.6 percent a year in people taking dopaminergic medications. This means that progression for motor symptoms was slower for people receiving medication.
Doctors often describe how far Parkinson’s has progressed using the Hoehn and Yahr scale. First published in 1967, it sorts symptoms into five stages based on disability level, with stages 1 and 2 considered early stage, 2 and 3 mid stage, and 4 and 5 advanced stages.
Motor fluctuations, including off time, tend to become an issue five to 10 years after diagnosis, and balance problems typically develop after about 10 years. These are averages, though — many people move through the stages more slowly than this, and progression isn’t always a straight line from one stage to the next.
Watching both motor and nonmotor changes gives you and your doctor the fullest picture of how your Parkinson’s is progressing.
Freezing of gait is one of the more disruptive markers to track. It can happen when you try to start walking, or you’re going through a narrow space like a doorway.
Freezing is often linked to off time, but that’s not always the case — research shows it can also happen during on time, sometimes right after a dose has kicked in. Some freezing is also resistant to levodopa and may not get better with medication.
Because the connection to medication isn’t consistent, note when freezing happens in relation to your doses, since that information can help your doctor adjust your treatment plan.
Other motor changes worth tracking include:
Nonmotor changes often track right alongside motor ones and can be just as disruptive, even though they’re easy to overlook during a short doctor’s visit.
Research suggests nonmotor symptoms tend to get worse as the Hoehn and Yahr stage advances. In one study, people in stage 3 (intermediate) had nearly six times higher odds of severe nonmotor symptoms than those in stages 1 and 2, and people in stages 4 and 5 (advanced) had close to 28 times higher odds.
Common nonmotor changes worth tracking include:
Bring any new or worsening symptom to your care team rather than waiting for your next scheduled visit. Reach out sooner if you notice:
A symptom log that notes what you experienced and when, relative to your medication schedule, gives your doctor the clearest information to work with. It can also help your doctor tell the difference between off time, dyskinesia, and other changes that can look similar day to day.
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Wish I had someone with PD to talk to not just the neurologists who don't have it and will never understand
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